1. Why do we need to make changes in our disability services?
Disability health services for children are organised and delivered very differently across the country because of the way they have been developed over many years. Some organisations provide services for a specific group of children who have a particular disability. This means that while there are excellent services for some children in an area there may be little or none at all for others. This programme aims to remedy this inequity in service provision.
2. What are the aims of the programme?
The programme which is entitled 'Progressing Disability Services for Children and Young People' aims to achieve a national unified approach to delivering disability health services, so that there is a clear pathway to the services they need for all children regardless of where they live, what school they go to or the nature of their disability or delay.
The programme's aims and objectives are based on the recommendations of the Report of the Reference Group on Multidisciplinary Services for Children aged 5 to 18 Years completed in 2009 and approved by the HSE in 2010.
Children should receive the health services they need as close to their home and school as possible. Some children may have their needs met by their local Primary Care services. An early intervention and a school age team will look after all children with more complex needs in a defined geographic network area, regardless of the nature of their disability. These teams will be supported by specialist services when a high level of expertise is required.
The programme also involves our partners in the education sector to ensure we are working together to achieve the best possible outcomes for children.
In some parts of the country children's disability services are already organised according to this model so major changes will not be needed everywhere.
3. Is this structure of children's services operating in other countries?
It is common across Europe and elsewhere for children to be seen by their local early intervention and school age services whatever the nature of their disability or delay. For instance in Bavaria (population 12 million) 125 Early Childhood Intervention centres, through a regional system, provide interdisciplinary services and supports for children with all kinds of disability and developmental delay. In the UK there are NHS Child Development Centres for all children with complex needs aged from birth to 19 years in a geographic area. They provide access to assessment, paediatric, nursing and therapy services and co-ordination with other services such as education and information.
4. How does this link with current policy on providing supports for children with disabilities and their families?
In line with current thinking on how people with disabilities should be supported to live independent lives, we need to change our approach to how we provide services.
We are moving to a greater recognition of the family as the centre of a child's life with health professionals supporting them to progress their child's development, rather than seeing the health professional as the expert and one-to-one therapy as the only means to help a child with a disability develop. The family is the most important influence on a child's life and they know their child best. The health professionals can bring their own particular expertise to add to the family's so that together they can maximise the child's development and potential.
We are also moving from a diagnosis-led model to a needs-led model. Two children with the same diagnosis can have very different needs, so we should not be determining the services and supports they may require based on their diagnosis.
To tie in with these changes we need to find a way to measure services on their contribution to the outcomes achieved for children and families, rather than just the 'inputs' by services. So, for instance, we want to know how a child's ability to communicate and play with friends has improved as a consequence of intervention rather than just count the number of sessions a speech and language therapist has given.
5. Who is organising the programme?
This programme is led by the HSE in partnership with the non-statutory disability organisations, Department of Health, Department of Education and Skills and associated agencies.
The programme is being organised at national, regional and local level. There is a National Working Group with representatives from the Department of Health, the Health Service Executive, the voluntary service providers and parents through their umbrella organisations.
Twenty four Local Implementation Groups (LIGs) have been convened to include all the services in their area and parents in the change process. While the National Working Group is monitoring the programme and ensuring a consistent approach across the country by giving guidance and support, it is at local level that plans are being formed and decisions made on how services will change in line with the national programme.
6. How long will it take?
The course of the programme will be different in each area of the country because some areas are already delivering services according to this structure, whilst others have a lot of changes to make. The aim is 'to hasten slowly', keeping momentum going but making sure there is careful planning and consultation with all involved. LIGs will need to decide how they will phase in the changes according to local conditions.
7. What consultation will take place?
There have been presentations made at national level to the umbrella disability organisations for service providers and for service users and parents, to Trade Unions and to National Primary Care services amongst others.
Workshops and presentations have been and will continue to be held for parents and staff at local level on the background and aims of the programme and how it is being organised. Contributions, questions and comments at these meetings are fed back to local and national groups as appropriate.
8. How will parents and families be involved?
Local Implementation Groups under the programme are required to include parent representation. Parents and families are being contacted through local and national parent groups, local services and schools to bring them together and identify parents who can represent the broad spectrum of needs. In some areas parents have devised their own method of keeping in contact with each other (e.g. online) to support their parent reps and provide a means of two-way communication.
9. How will Local Implementation Groups find out about gaps and inequities in their area?
An extensive national mapping exercise has been conducted with a staged process to review all health services and supports for children with disabilities and their families. Stage 1 gives a picture of current staffing resources providing disability health services to children aged 0-18 in each area. Stage 2 directed in each area by the Regional Co-ordinating Group and Local Implementation Group includes detail of catchment areas, specialist services and expertise, accommodation, numbers of children attending services and the nature of their needs and existing care pathways.
10. What national guidelines are available for LIGs going through this change process?
Working groups at national level have developed the following documents to guide the change process and the establishment of children's disability teams:
- Guidelines for LIGs on developing a Governance Structure and Policies for Children's Disability Services
- Guidelines on Training and Development for Children's Network Disability Teams
- Guidelines for Parent Representation on LIGs
- Framework for collaborative working between Health and Education
- 'Outcomes for Children and Their Families' - Report on an Outcomes-Focused Performance Management and Accountability Framework for
Early Intervention and School Age Disability Services
- Guidelines on Reconfiguration of Services
- Guidelines on Individual Family Service Plans
11. What will happen to services for children and families while the change is taking place?
Parents and families will be kept fully in touch well in advance of any changes in service to be made. Each LIG is planning very carefully for continuity of service provision and families will be consulted in advance of any planned changes in service.
12. Who will employ staff in the future when the new structures are in place?
The new structures to provide geographically based teams will come about through partnerships between the existing organisations. Staff will continue in nearly all circumstances to be employed by the same organisation that employs them now. They may be working in a different location or work in a team alongside others employed by a different organisation.
13. Are my child's present services going to be curtailed because of the need to spread services further?
The aim of this programme is to ensure equitable access to services for all children according to their individual needs. The LIGs will make informed decisions on the optimum use of resources, based on local information about resources and the needs of children in their area.
14. Will my child in a special school still get therapy services?
Children will get access to services within existing resources according to their needs regardless of where they go to school.
15. How will it be decided where a child's needs can best be met?
A national working group is developing a national policy on criteria to access services based on children's needs. This was tested in four areas in 2013 and is currently being reviewed before being submitted for national approval.
16. How will we know that this model is working?
Until now we have had no national method of measuring the effectiveness of children's disability services. When the Outcomes-Focused Performance Management and Accountability Framework for Early Intervention and School Age Disability Services is implemented we will be able to measure the contribution of services to desired outcomes for children and families.